Was treated for 3 or 4 months ivig treatment 5 times..It has done nothing!! I have muscle twitching throughout whole body.. I feel weakness in legs feet and slowly hands at times..I can barely stand long without a cane..My legs feel like boulders walking i hibble with a cane doing that 1960 bone test..U know that one vibrations knicks feet knees.. yet my doc says u dont have alot of weakness yet i do have numbness and Im like huh!! I take gapapentin 3 xs a day at 600 mg i been taking it fir 9 months im so used to it, it dont make me sleepy.. This doc is now stopping treatment, and referring to me a pain doctor in neurology in hospital for special surgery in nyc..This doc is also with them..Any help advice grtly appreciated..Sleeping at night for last year been a project! On top of this i have lung isuues breathing issues..Doing some research it seems my nerve damage is irrereversible!! Please help thks and prayers to ever is going through this awful disorder!

oh ok well i had been on prednisone til about a week ago but that was for my lungs..Ive had ground glass on lungs.. May need chest biopsy around corner soon..The ivg another 45 mins left its rough..But good to know the info u gave.I have some weakness in hands and arms lately.Been walking with cane 7 months.I hear u in wanting your life back the lil things we take for granted like walkinv.While the ivg in me pain through out whole body diff parts at times..Like right now my whole left leg and hand on fire!!

Hi guys Im nervous.. I have been diagnosed with cidp..I start ivg treatment on monday..Ive had this for 8 months in addition to breathing problens which i been seeing a pulmo for.My question is i have to go for 5 days next week..Is it painful will i be out of it.My job knows ill be out sick so at least thats good. But I know there could be side effects such as cold like symptoms..and yes breathing problems..Can anyone fill me in with info.. i have been walking with a cane and can barely stand up for few mins..This been worst experience in my life ..This all happened out of nowhere..Any advice is helpul thk u And godbless u all and speedy recovery!!!

ok so as i await to do more work for something specific they want to test.. I’ve had a tough weekend in pain tremendous knee pain and in foot stabbing burning and some weakness in hands.Im taking gabapentin 400 ms my knee today has felt like someone is stabbing it and also pain in other knee.I have not been diagnosed but its frusturating.A friend of mine said to go to hospital earlier i been to hospitals enough the last month.Today i could hardly put weight on my leg for a few hrs and now as i write this it just started again the pain.My question is this has anyone had pain like this.Im walking with a cane i was hobbling on that opposite leg earlier.i don’t know if i should go to another near I’m awaiting my 4th to get into office after 4th to do bloodwork.All the bloodworm has been normal.If normal this time they want to do a spinal tap.on top of this i have ground glass on lungs causing me breathing issues and coughing.The breathing issues are better now but now i have a monotone voice.Im scared idk if its smoking of disorder like ms cider gbs tho it cant be that cause this has been going on 3 n half month now.Any advice helpful thank u.

Very frusturated symptoms getting worse.. fingertips are red now fingers till move on own while sitting.. Doc i saw other day wants more bloodwork thru the doc that i saw before him.I call today he wants to see me before the blood work smh..next appt july 5th.. idk maybe its time to see another doc i cant be waiting that long unfortunately it takes that long to make apptmt.These docs just dint care see me in few weeks but by that time these symptoms will be worse…They close to answers its frusturatting..This last neuro said if blood work normal spinal tap..Any suggestions advice to get thru this?

hi it started in feet went to legs now its in hands. yes pain throughot body. emergency room will do nothing i just have to get blood work done.I have the tingling th numbness.Yet i grabbed ice cubes with hand after 45 mins my hand was burning..my nerves are shot

no i didn’t jimit was different doc and these apps very hard to come by he didn’t have one till july. i couldn’t wait that long. So i went to a professor at montefiore.Hes the one who wants more blood work done.Do u think i have cidp jim?And if so does it seem i have a lot of damage that cant reverse.What was your story btw jim as I’m talking the gabapentin just kicked in ouuuuuuuchhh..